Not sure if it's still the same procedure as in March, but if you haven't done it already: <a href="https://www.eff.org/deeplinks/2025/03/how-delete-your-23andme-data" rel="nofollow">https://www.eff.org/deeplinks/2025/03/how-delete-your-23andm...</a>
I sense a lawsuit incoming that could lead to a supreme court decision on the basis of this being medical data, who actually owns that data? It really isn’t 23andme’s dna to sell to the highest bidder, it’s the customer’s protected health data, and would fall under HIPAA.
> Bankrupt genetic-testing firm 23andMe agreed to sell its data bank, which once contained DNA samples from about 15 million people, to the drug developer Regeneron Pharmaceuticals for $256 million.<p>Some juicy data they sold there.
It's crazy that your own genome is not protected health information. Your doctor can't just sell your info to another doctor when they close their practice.
This is honestly a fantastic outcome.<p>Regeneron is among the most science and data focused biopharma and has a long, long history in genetics. They know how critical privacy is and will ensure the data are used to advance human health.<p>Potentially an even better home for the data than in the company, since now will not have pressure of quarterly reports.
One time fee, perpetual services are (mostly) inherently unsustainable.<p>There should've been an on-going fee to house samples, maintain the website and the labs, and expand the options.<p>The thing with versions of processes was an expensive way to do it.<p>Lots of lessons to learn and, hopefully, there will legislation in the EU, US, and elsewhere to regulate personal genetic data as PHI.
So I have to assume my DNA data was illegally sold by 23andme to Regeneron.<p>In return, I just asked Regeneron to provide me a copy of sequenced DNA data from their CEO and founder. As Regeneron seems to be cool with buying and selling of DNA data they should not have a problem to share their leadership's DNA.